Just outside the small town of Ipava, Illinois lives a tight-knit family of five. The youngest is 6-year-old Kassidy, who is often found fishing at the lake with her older brother and sister or watching the chickens roam their large country yard. She’s described by her family as full of grit, positivity and kindness – three traits that helped her navigate a diagnosis that changed her life.
A few years after she was born, her mother Kaitlin said they noticed something wasn’t quite right. Kassidy struggled to maintain her balance.
“At the age of 2, her failure to thrive pushed us on our search for better answers,” Kaitlin said. “At just over age 4, Kassidy had fallen so many times and required multiple sets of stitches within a few weeks. We were finally referred to a neurologist and found a diagnosis through genetic testing.”
Kassidy was diagnosed with Collagen VI Congenital Muscular Dystrophy — a rare condition causing muscle weakness and skeletal abnormalities without any intellectual disabilities.
“There are some characteristics of the disorder that are similar to both muscular dystrophy and connective tissue disorders. It’s kind of an overlap, and this makes it harder to diagnosis,” said Dr. Nancy Mendelsohn, clinical geneticist and chief medical officer, National Accounts at UnitedHealthcare. “So, some of the things you may notice at birth is that the child is very weak and floppy. They can have very flexible joints, particularly at their fingers, feet, toes and wrists, and they also have joint contractures because they don’t move well in utero.”
Kassidy relied on her family to help her perform simple tasks, like going in and out of the house, sitting up at tables or being propped up to watch TV. To help her gain some independence, her mother pushed to get Kassidy a powered wheelchair. Unfortunately, it was not a simple process.
“The truth with any parenting is that there are always new challenges and new obstacles to overcome. With special needs, you cannot do it alone. It takes help and people that care,” Kaitlin said. “It’s hard when all you want to do is help your child and nothing seems to be working.”
Kaitlin was routed to the UnitedHealthcare Special Needs Initiative (SNI). SNI pairs families with a dedicated, specially trained advisor to help them better navigate the health care system. It is designed to help reduce their out-of-pocket costs and improve clinical outcomes. Now in its fourth year, the program has helped more than 100,000 families enrolled in commercial and Medicaid health plans. It has evolved into a viable solution to help families with the complexities of managing rare diseases.
“Managing life with a child with special needs can be challenging for families, both physically and emotionally,” said Sean Mcnattin, vice president, commercial product at UnitedHealthcare. “SNI was created to help advocate for these families and make sure they receive the support, resources and services they need. We want to take some of the load off parents so they can focus on their family and kids.”
Through the program and the work of her personal advisor, Beth, Kassidy finally got her powered wheelchair. Beth continues to work with the family one-on-one in order to develop a deeper relationship and better understanding of Kassidy’s needs.
Relying on the same advisor every time they call is a relief for the family, as they no longer have to continuously explain Kassidy’s condition before getting what they need.
“I have gotten to know her so well that if I leave my name, I am sure she knows just who I am,” Kaitlin said. “I now can just send her an email and have her look into contracts or paperwork that I need help with. Special needs parenting can be a full-time job.”
Seeing the look on Kassidy’s face when she finally got her wheelchair made it all worthwhile, Kaitlin said.
For Kassidy, it’s given her newfound independence. She explains the best part about her new wheelchair below.
She now has increased energy to do the things she loves. She can finally go watch the chickens in the yard or help in the kitchen, without extra support.
“In this journey, we have to have support,” Kaitlin said. “And we as a family are forever grateful for (the help) we have received.”